You may have noticed I’ve been missing in action lately. There is a very good reason for this and it’s time to make an announcement… Life has taken a major turn in the last 6 months.

Not only did we launch the Foggy Frog and the Pain Gang picture book in September last year, and help to organise and host a national conference in Adelaide in October, but on a more personal level E and I are expecting a baby! Due date 6 July 2017.

Yes, you read that right! We’re over half way to meeting this much awaited new addition to our family.

Why has it taken me so long to make this announcement?

Simple. I wanted to tell as many people in person as we could before I announced online. If I do know you offline and haven’t had the chance to tell you in person yet, I apologise. I’ve tried my hardest to see as many people as I could over the last few months but I felt that I couldn’t really hold off much longer with making this announcement as I’d been avoiding blogging until I was ready to announce.

Pregnancy, Parenting and Chronic Illness

Those of you who have been following me for a while, or who know me in real life, know how important the idea of being a parent is to me. You would also know how much thought, research and discussion has gone into the process of deciding whether or not to try for a baby. We obviously made the decision to try, but it was not an easy decision to make.

Living with several chronic illnesses has limited what I’ve been capable of achieving over the past few years. I’ve very slowly built up my work hours and my capacity to exercise and participate in social activities to a point where I felt comfortable coping with whatever impact being pregnant and being a parent may have on my health.

I know that it’s not going to be an easy process but it’s something that is important enough to me that I’m willing to modify what I do to make this work.

Over the next few weeks I’m hoping to begin a series of posts that talk about what it’s been like so far being pregnant with fibromyalgia and chronic fatigue syndrome. While reading these posts please remember that I’m sharing my personal experiences in the hope they’ll help others.

What I experience may not be the same as what you experience. In fact, the research I did before becoming pregnant showed that people’s bodies react in very different ways to being pregnant with these conditions. There’s no way to know how it would impact you in advance. All you can do is have strategies in place for coping with the wide variety of possible outcomes.

Anyway, enough of me talking for now… I’m just so excited to finally be sharing the news. We’re going to be parents!!!

On Saturday, 24 September 2016, we held a book launch party to celebrate the completion of the long awaited Foggy Frog and the Pain Gang picture book. I say “long awaited: because the book has been almost 3 years in the making and I first got support from the community through a Kickstarter campaign in March 2014.

The Foggy Frog and the Pain Gang picture book has been developed as a way of introducing people to the symptoms of invisible illnesses. There is a strong focus on the different types of pain that people may live with, but it also looks at symptoms such as brain fog and fatigue. As well as the main picture book part, the back of the book contains more in-depth information to help promote further discussion.

We had around 60 people attend the launch, including a few local politicians and key medical staff in the chronic pain field. It was a great opportunity to also raise awareness of the fact that these conditions are often being overlooked from a funding perspective, as well as from a general quality of life perspective.

I still have a bit of work to do to get the paperback version of the book available online, but you can get the Kindle version on Amazon now. You can contact me via the contact us page if you’d like the printed version (I have some of the Kickstarter print run still available for sale).

There is also a giveaway currently running through Goodreads (10 copies available) if you’re interested in trying to win a copy of the book.

I really wanted to do the book launch this week, as it coincides nicely with Invisible Illness Awareness Week. However, due to the fact that none of the print-on-demand printers seem to allow A4 Landscape books, I had to redesign the book to be square for online sales. This should be available soon and I will let you know when it is!

I want to give a big thank you to everyone who helped make the launch a success. In particular, thank you to:

Hello, yes I’m still here and still alive. Today I want to talk to you about remembering to Say No.

I’ve been wanting to write this post for a few weeks now but have struggled to find time when Foggy Frog isn’t being a pain!

With so much going on, writing this post has been a good reminder to me that I need to remember to pace myself and listen to my body. Although physically I’ve been able to do so much more, I’ve found mentally I’ve been struggling the last few weeks.

This means it’s time to reevaluate again and find what I can step back from to achieve balance again.

Pacing is such an important part of my management strategy for the pain and other debilitating symptoms, such as the fog and fatigue. With the changes in my medications over the last few months my pain levels have been lower and, as I said above, I’ve been able to do more than I have in over 3 years.

I’ve joined a gym and have found that doing something most days (generally a stretching based class or a swim) has been beneficial for my pain levels as well. My step count is back to an average of 7,000; a level I haven’t managed since December 2014.

I’m still working on the Australian Association of Environmental Education Biennial Conference occurring in October, and my upcoming book launch on 24 September… less than a month to go! This has meant meetings almost every day about one thing or another.

As you can probably tell there’s a lot going on at the moment. In fact, it’s a little too much so I’ve been slowly stepping back from the conference planning and trying to work out what the essential things are for me to get done for the book launch to be a success.

I want to keep up my physical activity, as I’m trying to make sure I’m as healthy and strong as possible for when we start trying for a family (something we’re seriously talking about at the moment). So that means saying No to some of the other activities in my life.

Right now I’m saying NO to:

taking on any more for the AAEE Conference planning

to other volunteer opportunities that don’t have any connection to possible paid work in the future

meetings I can postpone until later

I’m saying YES to:

time with family and friends

actions that will progress the book launch

actions that will help me be healthier and stronger (exercise, diet, rest)

Before I get into Share Your World for this week I wanted to share an interesting day that’s coming up soon. Now, there seems to be some confusion about which day it actually is but sometime in the next week it’s National Napping Day. I’m unclear about whether this is an American day or some other country but I’ve seen it advertised as being either tomorrow (11 March) or Monday (14 March). (Update: National Napping Day is 14 March)

I recently found out from Casper, mattress makers from the US, about National Napping day and they had this interesting infographic to share:

I don’t normally share things from specific companies but I thought this was a simple description about the benefits of napping, something a lot of us with chronic illness do. The fact that Casper contacted me had no direct influence on my desire to share information about this day and I’m not endorsing the company’s products (in fact I’ve never seen them), I’m just utilising the effort they’ve already used creating this infographic. This is not a sponsored post in any way.

Now on with the post…

Share Your World – Week 10

What would you ask for if a genie granted you three wishes?

First of all, I’d wish to be free from the chronic pain and fatigue that I live with. Without that I’d be able to do most of the things I currently want to do but can’t.

Secondly I’d wish for my family and friends to be in a position that they feel comfortable spending time on things most important to them. This would mean more time for meaningful catch ups for all of us.

At this point in time the mosts meaningful experiences to me are the small ones when I get to do something meaningful with someone I love. Meeting the newest addition to our family (our closest friends just had their second child who we got to meet last night at just 3 days old) was amazing. Watching the thunder and lightning from under our new pergola with E during the week. Having a deep and meaningful conversation with E, or my mum, or one of my closest friends.

Apart from that I went through phases of wanting to be a music star (performing in musicals), a vet, and a zoo keeper.

Complete this sentence: The best day of my life was….

This is a hard one, as there are quite a few to choose from and obviously my life isn’t over so there is likely to be many more amazing days to come…

I’d have to say that one of the best days of my life so far was the day I married E.

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It was such an amazing and relaxed day filled with the love and support of our family and friends. I spent time planning and creating each aspect of the day so that it aligned with our values. A beautiful ceremony in E’s Amma and Uppa’s backyard with flowers from friend’s properties followed by a picnic lunch in a local park with baskets and blankets and glasses used on the day as favours for the guests. All the decorations I made myself and the cakes were made by me, Amma and one of my friends. Tea and coffee was served in Royal Vale sets owned by Amma and E’s mum.

Even over 4 years later, people who attended are still commenting on how much they enjoyed the day!

Bonus question: What are you grateful for from last week, and what are you looking forward to in the week coming up?

In the last week I’m grateful for improving health that has allowed me to participate in several social outings and run a workshop for one of my projects. I’m grateful for E allowing me to broach the topic of family planning again and being honest about his feelings, helping me understand why we’ve been struggling to talk about this up until now.

This week I’m looking forward to celebrating my mother-in-laws birthday and continuing to work towards my goals of improved health.

This week is going to be a one post week so just Share Your World. Tuesday ended up being a full day with appointments and work, and the last few weeks have finally caught up with me and I’m going through a bit of a crash, so I didn’t manage to write my usual post then.

A quick update on the No Buy Challenge…. I’m still going well. I have been doing some online browsing but the only things I’ve bought outside of groceries was a set of Dr Seuss books through our local newspaper and a copy of Peepo secondhand from the markets.

And now for my answers to…

Share Your World – Week 8

What household chore do you absolutely hate doing?

I don’t think I can say I absolutely hate any of the chores I do around the house. There are some I’m not able to do but even those I don’t think I’d claim to hate. I actually enjoy doing the washing, putting on Mr Vacuum, making the bed and looking after the animals. Others I don’t so much ‘enjoy’ but I don’t hate, like loading/unloading the dishwasher and cleaning the toilet.

What was the last URL that you bookmarked?

The last URL I bookmarked was my local library website (and that was quite a while ago). I don’t actually use bookmarks that often.

Close your eyes. Listen to your body. What part of your body is seeking attention? What is it telling you?

My body is telling me that it needs more attention and I need to slow down more. The tightness and general aches and pains are telling me I’ve done too much over the last few weeks and I need to remember to continue pacing.

Would you rather have a two-bedroom apartment in a big city of your choosing or a mansion in the country side in the state or country where you currently live?

I’d rather live in the country side than in a big city but I’d also prefer a smaller house, not necessarily an apartment but a house that is just the right size to fill our needs and that doesn’t have room to accumulate lots of clutter and dust gathering items.

Bonus question: What are you grateful for from last week, and what are you looking forward to in the week coming up?

I’m grateful for the opportunity to slow right down again and focus on my health. Although I still have a lot of work to do, I’m grateful that I feel ok with slowing down when I need to and I don’t feel like I have to push myself too hard to get things done.

In the week coming up I’m looking forward to reading more Dr Seuss books.

Share Your World – Week 7

What are you a “natural” at doing?

I’m a natural at engaging with babies/younger children. When they’re really young, I can usually get them to settle in my arms. Older, they seem to be attracted to me and want me to participate in their adventures. I’m enjoying spending more time with my friends children these days and I really can’t wait until we’re ready to try for our own.

Would you prefer a one floor house or multiple levels?

Definitely one floor. Our current house has only one step down across the middle of the house but even that means I can’t just put Mr Vacuum on to run around the whole house… He just focuses on the bottom floor (kitchen, family room) most the time.

Mr Vacuum resting after cleaning the floor 🙂

I wouldn’t want to drag washing up and down stairs and everything is just so much easier on one level.

What was your favorite subject in school?

My favourite subject at school was music. I participated in school musicals and other events. It was a great break from the more serious maths, english and science I focused on all the way through to the end of year 12.

At university, I focused on subjects related to the environment and sustainability.

Complete this sentence: If only the rain.. came regularly year round. It would save me so much energy if the rain came regularly enough that I didn’t have to worry about watering 🙂

What are you grateful for from last week, and what are you looking forward to in the week coming up?

I’m grateful for the time I got to spend with my friends and their children.

In the next week I’m looking forward to catching up on some much needed work (supposing this relief from extreme fog stays – I can focus enough to do a little work again now).

What turns you off? Negative tension – I’m fairly sensitive to how others are feeling and I often struggle when people are being silent to deal with them.

What is your favorite curse word? Sugar… Or at least, that’s the one I use the most… I don’t really swear much.

What sound or noise do you love? A cat purring, a baby (almost all their noises – no, crying doesn’t seem to turn me off)

What sound or noise do you hate? Hate is a harsh word, but I definitely struggle with the sounds of chalk on blackboards, fingers moving over foam, and many other similar noises. They hurt my teeth and give me a headache.

What profession other than your own would you like to attempt? I’m quite happy at the moment, but I have considered midwifery in the past…

What profession would you not like to do? I no longer would want to do a profession that required working full time (or more than full time) as I feel that would impact on my health too much.

If Heaven exists, what would you like to hear God say when you arrive at the Pearly Gates? Welcome.

Bonus question: What are you grateful for from last week, and what are you looking forward to in the week coming up?

I’m grateful for all my friends and family. I know this is similar to previous weeks but I really am grateful that they make the effort to spend time with me. I also learnt over the weekend that, even when I haven’t seem them in quite a while, they have kept me in their thoughts as much as I have kept them in mine.

I’m looking forward to spending more time with friends tomorrow, and finishing to set up our spare room as a day room for me (progress photos below).

Your turn! Let’s see if you can answer at least one of the questions above in the comment section.

I had a wonderfully full weekend and got to catch up with several friends I hadn’t seen in a while and I’m doing well with the No Buy Challenge.

It was fairly hot here over the weekend which (although impacting on energy levels) made for great weather for a trip to the beach and time spent outside.

Mid-way No Buy Challenge Update – Week 10

On Saturday E and I had a wonderful afternoon tea with Rach and her husband as a mid-way catch up for our 20 week No Buy Challenge (Yes, we’re already 10 weeks in!). We took the time to reflect on how the first half of the challenge had gone, my small discretions and temptations early on and Rach’s temptation that she managed to avoid in week 6.

We also considered the future, discussing whether this is something that would be ongoing for us or if we’d repeat the challenge in the future. For me the challenge has been relatively easy (I really don’t do that much shopping) where as it’s much more of a change for Rach. I’d probably continue (but more as a being mindful and intentional about things I buy then saying NO to all buying) and Rach straight out said no to continuing but would consider doing it again when they’re back from their trip (the reason she’s doing it this time).

10 Great Things about Me

Last week, while reading other blogs (something I try to do daily now) I came across a wonderful post on Chronic Rants that discussed how those of us with chronic illnesses can tend to focus on the negative impacts of our illnesses on our lives which impacts on our self esteem. She recommended that we should make a list of 10 great things about ourselves to counter the lowering of our self esteem…

Here’s mine:

I’m optimistic. I always (or almost always) see the positive side of things and don’t let the negatives overwhelm me too much.

I always have time for friends and family. Even if it’s just to listen to them and support them that way. This weekend was full of time for my friends. Afternoon tea with Rach on Saturday, lunch with another friend Sunday down the beach, and helping other friends with getting their house ready for rewiring in the evening (I sat and chat with V who’s expecting their second child in just over 4 weeks while E helped her husband with sealing everything they didn’t want dust to get into).

I adapt well. Life has thrown me quite a few curve balls (chronic illness being a major one) and I’ve able to adapt my lifestyle so that it hasn’t impacted too badly on my mental health.

I’m passionate.

I live by my values. Over the years I’ve learnt to identify what’s important to me and (partially thanks to being able to slow my life due to my chronic illnesses) I do my best to prioritise these values, my family and friends, living sustainably and looking after my health being the most prominent of these.

I love to learn.

I love to help others.

My friends and family love and support me in everything I do.

I’m (mainly) a positive person.

I’m unique!

I challenge you to make your own list of 10 Great Things about You. It does wonders for your self esteem.

NOTHING, or a note that just says ‘Be Present’. I would use it as a reminder that happiness comes from within, not from external sources.

What do you want more of in your life?

I’m very happy (or as happy as I can be) with my life at the moment but I’d be happy if I was able to have more family time and less pain/health issues.

Daily Life List: What do you do on an average day? Make a list of your usual activities you do each day.

An average day… I was planning to do a day in my life style post like my friend Joy and Toni Bernhardanyway so I guess I’ll describe it here.

Wake Up time… Generally between 8 and 9 am (although the last few days I’ve woken earlier then fallen back to sleep). At this time I take a moment to scan my body and see what parts are hurting the most and the least (there’s never no pain so it’s more an assessment of how well the day is going to start).

While still lying in bed I do at least a 5 minute meditation before stretching and slowly sitting up. Most days I’ll take a shower (sitting on the floor to avoid falling over or making pains worse) and get dressed.

Breakfast is the next task to address. I make a cup of tea and see how much energy I have. Most days I just have a piece of fruit or something premade that’s easy to eat. When I have the energy I’ll make a cooked breakfast with veggies and eggs.

While the kettles boiling (and breakfast is cooking) I’ll do a short sun salutation. Just 5 minutes is enough to stretch out my muscles but it also wears me out again.

After eating breakfast it’s time for another rest so I’ll sit on the couch drinking my tea. I may browse Facebook on my phone.

After 10-15 minutes rest, I’ll read through some blogs for up to 30 minutes (usually closer to 15 minutes) then push the button that sends the robot vacuum on a round of the kitchen/family room and laundry.

I’ll clean the litter trays and then assess how I’m feeling.

If it’s a good day I’ll do an hour or two of work (writing blogs, working on consulting jobs) or spend some time cleaning up around the house with regular short rest breaks in between. If it’s a bad day I’ll put the tv on or listen to an audio book.

At around 11:30 I’ll start thinking about lunch. Generally this will either be left overs or a sweet potato which I throw in the oven with salt, pepper and oil and leave to bake for an hour.

After lunch I have a nap before either doing a bit more work/housework or putting the tv/audiobook back on.

Around 5 I start considering dinner. I slowly make dinner taking lots of rests and by the time E is home (generally between 6 and 7pm) dinner is ready to eat.

We eat and watch tv until around 9-9:30 when I take my medicines, floss and brush my teeth, shower and bed.

Bonus question: What are you grateful for from last week, and what are you looking forward to in the week coming up?

I’m grateful that I’m able to live a slow life. Over the weekend E and I were able to slow down and just relax. I spent a whole morning listening to audiobooks while E was on the computer and doing things around the house, we visited family and we went for a slow walk in the local national park.

This week I’m looking forward to continue living slowly. Taking the time to enjoy the simple things like the warmth of the sun and the sound of the rain. I’m also looking forward to afternoon tea with Rach as a special mid-challenge catch up as part of our 20 week no-buy challenge.

I can’t believe it’s almost the end of January already and we’re up to week 4 of Share Your World 2016 !

So far this year I’ve been struggling to maintain my balance. If I look at it from a week or month point of view I’m doing ok but on a daily basis I’m still struggling. Some days are crashed on the couch and unable to do anything much other than listen to an audio book or the tv in the background. Other days I’m rushed off my feet trying to do appointments and out of the house activities… I haven’t worked out the balance there yet.

It’s difficult for me to work out how to do this properly because I see the benefit of not having to drive more than once or twice a week (it’s still an activity that wears me out a lot) but then it means those days I am out I don’t manage to pace my step count, I don’t get my usual rest breaks, and I just over do it in general.

I’m also struggling to get any sort of regular routine in place for work activities. I’d love to be doing at least a minimum amount of work each week but Foggy Frog seems to be my constant companion again and he’s making it very hard for me to do anything for more than 5-10 minutes at a time with any hope of having reasonable results.

How do you pace yourself with activities outside the house or with adding in any work?

Anyway, being Thursday today, it’s time for another round of Share Your World.

Yesterday was one of those super full days where I over did it. That doesn’t mean there weren’t things I achieved that I’m really glad to have done though…

I managed to make it in to town to have lunch with E and one of his work colleagues before heading to the meeting I had in the afternoon. This is something that I really enjoy doing as it doesn’t happen very often these days unless I have a medical appointment in town.

Are you generally focused on today or tomorrow?

I do have a habit of focusing on things that I feel are important or scary that might be happening in the future but these days, thanks to the uncertainties related to my health, I’ve gotten a lot better at just focusing on one day at a time. Most weeks I don’t even look at my calendar in advance unless I’m booking something in. I might check it the night before when I’m getting ready for bed or when someone asks me what I’m doing.

Would you want a guardian angel/mentor? What would they tell you right now?

A mentor (or several mentors) provides inspiration, advice and guidance to help you succeed the best in life. Yes, I’d want that in my life and look up to several people in my life now as mentors.

Right now my mentor would be telling me to remember to be gentle with myself. As you might be able to tell from the last few posts I’m feeling very frustrated about my limitations at the moment. I’m wanting to do way more than my body will actually allow and I’m struggling to accept it. If my mentor was here right this minute they’d be reminding me that my health is the most important thing, without it I can’t do anything. They’d be telling me to continue to listen to my body and rest when I need to, to accept where I am at the moment, and to not set unrealistic expectations for myself.

Would you rather live in a cave house or a dome house made out of glass? (photos of the houses found on google search)

I love the idea of both but my dream house would be a dome house that’s built into the ground with lots of glass… something like this.

Bonus question: What are you grateful for from last week, and what are you looking forward to in the week coming up?

I’m grateful for the understanding and support of the wonderful people in my life. I realised in the last few weeks that I’m not going to meet my deadline for one of my consulting jobs. When I contacted the client to let them know they’ve been very understanding and said there is no rush and to just work on it as quickly as I can.

Being able to spend time with my friends has also been very satisfying.

In the next week I’m looking forward to talking with my doctors about some test results I got in the last week and hopefully getting some guidance on how to approach the issues that have arisen (More to come in an upcoming post on this).

I'm the author of Foggy Frog and the Pain Gang.
Diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Pelvic Congestion Syndrome in 2013. I'm currently trying to find a lifestyle that reduces the symptoms from these conditions and allows me to live a fulfilling life.
I'm passionate about sustainability, mindfulness, and simplified living, and I love being outdoors, yoga, walking, drawing, sewing and baking.